Abundant blessings; a viral curse

Last Fall (2005), I started moving into remission after 5 years of illness. No apparent reason for the remission, except perhaps long, patient approaches and strategies, and those periods of willingness to try new things.

I will forever remember the beauty and power and fun of these last months. By January 2006 I knew that, after a 5-year semester-by-semester delay, I wanted and could finally finish my dissertation and get my Ph.D. I remember the very moment when I said, "Enough; now I will finish." I did. I wrote the bulk of the dissertation in three weeks. And after 5 years of practicing daily survival with this DD, I did it without wearing myself out or making myself crazy. It was one of the clearest, most delightful times of my life. And that dissertation was good! I actually learned something--actually I learned a great deal about my field, and have some new contributions to make to it.

Graduation was in May. In full doctoral regalia I stood beneath the university tower, fireworks blazing overhead, and realized that it was the very spot where I stood 15 years before, with a dream for a doctorate, to knock insistently on seemingly closed doors just to get in for a chance. Life took many turns during that time; and I stand (well am lying down, actually) in gratitude that some spark stayed alive during those years and lead me on to finish.

Any day I knew that the calm, consistent energy might end, yet the gift continued into the Summer. I have just had the most glorious 3 months ever--they even topped graduation, but for a much simpler reason: I had alive and healthy times with my family. I was awake, aware, happy. I took each of my three children on special trips, able to approach them simply, rest, care for self as needed, but also fully and joyfully. My husband and I rounded out the summer with a couples retreat, and seeing friends, while enjoying forest and hills and streams.

My greatest delight was discovering an electric bicycle! Oh, my; I had forgotten the simple joy and freedom of speeding through the air on bicycle--it's been years! The electric one was as quiet as riding under my own power, yet required no effort on the part of my still vulnerable muscles and systems. I glided along with my husband, an avid pleasure cyclist, for the first time, ever! Just to be in the sun and breeze, glorious.

Sometime in the midst of the bliss I got a little cold. Not a big one or bad one; as usual I had some muscle weakness, took zinc and C for a few days and stayed rested and hydrated. The cold seemed to pass, and the weakness passed. Then came an unexpected "collapse"--as if I'd been hit by a truck. It got better for a day or so, then worse. Then it seemed the cold had not gone away after all.

A few days turned into four weeks; and what was still behaving in all other respects like a little cold had me laid out in bed as if having the worst flu ever. I seldom miss more than a day or two at work; for the first time since my first big collapses in 2000-2001, I missed two consecutive weeks at work. Unfortunately, in the interim, I earned a position of greater responsibility--the work is not harder or more taxing physically than when I was first sick, but the impact of my absence on my work team is more significant and could cost livelihoods for people other than me.

The team has been terrific, but I am frightened. Into six weeks now, without being able to work a full day, or work at more than about 30% capacity for the few hours I made it in, the future is uncertain. My boss is supportive, allowing me time and telecommuting options, but the there is only so long either of us can allow this to go on and the team stay well-funded and on schedule without a full-time lead.

I had to begin investigating a disability retirement option I qualified for on my 10th anniversary at my job, which (thankfully!) occurred in March of this year. A wise family member helped me with a simple and sane approach. By December I should know the two things I need to make such a big decision: 1) whether this relapse will be short or long; and 2) whether I can actually perform my current job or be moved into something else. Finding that choice point took a lot of the pressure off of needing to get better quickly, or at least needing to know whether I would.

I cry a lot these days. I also smile that my degree and my beautiful Summer are mine always, and even this DD can't take those away. I hate how I feel, physically, and wish my kids could come home to a healthy, relaxed Mommy, rather than the weak, shaky, painful and often gloomy one they find these days. I look for those transcendant moments, when I can simply be in acceptance; but I'm struggling right now, and finding those only rarely.

Mostly, today, I wanted to share my story--for support and for encouragement about what can happen on the "good days." Keep the faith, friends--amazing gifts may be just around the corner, whether in months like I had, or in a moment of sun and breeze.

Thank you for the awesome post,
and I say, "AMEN" to it.
I am finishing my RN degree, yes I am finally well enough to be in school full time.
I make up for it on the weekkends though. sleep alot and heal my body.
I am pursuing my dream, and I remember a few yrs ago I could not walk across my home.'
I have good and bad days,
but one thing Ive learned too from this DD
is life is short and make everyday count.
Its a balance w/this illness.'
Thanks again,
Iggy

Your story is very inspirational in the fact that it teaches us to cherish every moment. Congratulations on your doctorate! I hope you continue to keep the faith and know that prayers are being sent your way. Hug your kids often and tell them that you love them many times a day!
Take good care of yourself! Kim